We are the Bafus family! Join us as we document our journey through Duchenne Muscular Dystrophy! We are a family of 4 from Spokane, Washington State. Our DMD Heroes are Mason (5) & Jack (2).
@@BafusFamily I feel better knowing that it’s common for that to happen. My son just got the gene therapy last week and hasn’t been wanting to eat much so I was a little concerned
@@BafusFamily But it's just true, isn't it? 🙂 I'd really like to see a specisl xideo about Mason's abilities before and after treating him with Elevidys....
He this not have room to sleep in his bed he have a lot toys on his you need to blow your nose do you have a cold are a running nose what is dmd stand for bed animal toys how old is your boys what grade in school how did he broke his foot did he get a x-ray
im 19 and have high functioning autism, i STRUGGLED to get das. i did the call with my behavioral therapist, 2 healthcare professions said no so i had to get a coordinator on who got a 3rd healthcare professional that finally said yes. the entire call took over an hour ( 5 minutes waiting in the queue ). it was very stressfull for me and i love disney so much but the thought of having to do that again really upsets me, maybe it will be easier next time? so glad you got it though, DAS really does help and do wonders! i hope yall had fun :)
The DAS was definitely a game changer I agree! I also was not easy for us either they almost denied us and dropped the call before I requested to talk to a health care representative to explain the disease/autism that he experiences and had to push. I also hope we have the same luck next time. It is stressful!
Inspiring! So much love in this family. Please provide an update on weekend dosing. We are looking at starting weekend dosing for our 5 year old. Blessings to you and your family.
We definitely will! We still haven’t started I’m still waiting from the neurologist to answer a few questions first 🙂 the Jett foundation just posted a webinar on weekend dosing I plan to watch!
I live in the UK and we are going to Disney World and Universal Studios in 9 days time! I have primary progressive multiple Sclerosis and have had it for 11yrs, about 5 yrs ago when we last went to Disney world DAS pass was so much easier, but we will be trying to contact Disney World to see if we can get it! I’m in a wheelchair 90%of my time and my bladder can wake up at anytime and say I need to go now! And I don’t have long to hang around! Hopefully we will get in??
They no longer offer pre-selections. Glad you got approved. Thank you for letting us know that you can push a little bit in case they try to quickly turn you away. Will be applying for a toddler with autism for the first time.
@@BafusFamilyI’m genuinely happy for you. I hope you can get as much help as you need for your children. The problem with Disney Parks is there’s a complete lack of consistency in their decision making with how the new requirements have been advertised. I meet the newly implemented requirements exactly as stated (as one of the “Guests who, due to a developmental disability like autism or similar disorder, are unable to wait in a conventional queue for an extended period of time”), yet was denied accommodation, and I’m finding out from other autistics, as well as the parents of autistic children that they’re also being denied.
Oh wow…I’m sorry to hear that. And I agree it’s very frustrating with programs like this have so many inconsistencies like this one when the qualifications are stated clearly. I really had to push for it and didn’t take no for an answer so it definitely was not easy. I agree it can get extremely frustrating and this is just one out of many!
I just wanted to tell our experience. We have an 8 year old daughter with high functioning autism. Applying for DAS for 1st time. We got on @ 6:58 did the terms of service agreement and entered chat at 7 AM exactly. Answered the questions from cast member. She asked name of person for which requesting das and names of all others in the party, arrival and departure date of upcoming visit, if the person in need of das was present and if we were on a device with video and audio capabilities as we would have to move conversation into a video chat. Then the video chat stated and she first explained the recent changes to the DAS system and that past eligiblity does not guarantee current eligibility. Then she asked out concerns. We told her of our daughters diagnosis and offered to show or email documentation, to which she said was not necessary. Then she asked what issues would extended waiting in line cause..to which we explained our concerns. She then asked if she could speak to our daughter and asked her a how she felt about waiting in a lines (which she was unable to answer as she does not do well understanding hypothetical questions). After which she said that she was approved and took her picture then took about 5-10 minutes explaining how the DAS system works and. How to use it on the app. We were completely done by 7:20 am and so relieved as I spent weeks worrying about this. Overall it was painless and seems as though they are trained to look for inconsistency and people trying to get das who don't really need it.
your videos and your experience with the disease, and I want to contact you so that you can share your experience and advice with me, because this disease is very rare and I have never heard of it. I hope you read my messages and answer me soon. thank you
My name is Houria from Spain I want to tell you that I have a son the same age as your son and he also suffers from Duchen Peker muscular dystrophy, I have been following for some time
We will make a before and after video of mason! Jack is still just crawling stairs he doesn’t have the strength yet to climb stairs. We are working on that in PT for jack.
Beautiful Family, I’m Glad You All had a Great time, my 23 year old son (High Functioning ASD) and I was there for 8 days this past November/December. We Love Disney too we also stayed at All Star Movies. ❤🏰
I’m Happy you were able to get the DAS. I’ve gotten the DAS in the past for my son he’s 23 and is High Functioning Autistic. He might be denied when we go back in a few years, from what I’ve heard they seem pretty strict about giving the DAS. We just went to WDW this past November/December and my son was approved, as well as when we went in 2017 and 2010. If my son is denied we’ll purchase lightening lane single pass and the new lightening lane multi pass. You All Have Fun ❤😊
They do tend to be pretty strict so I was happy to be approved. I agree the new multi pass would be a great second option 🥰 I bet Christmas time was a wonder time to go! I would love to see it all decorated!
@@jenniferagee2450 Hopefully, they’ll have the problems since the revamp sorted out. Still apply, but don’t be surprised if you get denied. I don’t recommend the purchase of the Multipass, though, especially if you decide to come to Disneyland. The times are artificially inflated by about 20-25 minutes depending on the ride.
Hi! Why does Jack take exondis and Maison took elevidis? And does Maison take steroids after Elevidis?) My son is going to take Elevidis in about 2 days. We are so nervous but excited 🙏 do you see good changes after elevidis?
Jack is only two and the age minimum for Elevidys is four so we are doing the Econ skipping until he is of age for gene therapy:) and yes we have seen great results so far with it and he had very min side effects. I hope your guy did well with his infusion! How is he doing?
@@BafusFamily thanks for your reply!) This experience exchange is so precious 🩵 My son took Elevidis on the 28th of June. On the third night he had high temperature and vomited twice, he was feeling weak. On the 4th day he had no temperature but still feeling weak and didn't eat anything, just water. The 5th day - he felt better, thanks God he is doing good day after day. So excited about seeing his strength improving but we must be patient 😊 We are in Russia and my son became the first boy here who took the infusion! So your videos with amazing Maison was like guiding star for our family))) Thanks a lot for sharing! 🙏 also here the kids who take another exon skipping therapy are not allowed yet to get Elevidis... That's why I was asking about Jack..
This is awesome!! So glad for y'all. Hope this helps Mason out and your other son when he gets it. We're on the list waiting for our Neurologist to get word from our insurance to go ahead with it for our son who is 14.
Good. The less prednisone the better (to some extend). Have you alreayd considered Vamorolone? I am unsure if it is available alreay in the USA? How about Givinostat? I think it is not available yet, but Vamorolone has less side effects (better for bones I think and much better for his growth, become normal again!) and givinostat is I think an HDAC inhibitor, which means it treats Duchenne very differently than Elevidys and in all likelihood should be able to combine with it without side-effects (but that is my guess). Good to see the other boy can get some relief with exonskipping! All the best and keep up the good work. And indeed: eat healthy, it is so so so important also for the parents. At least that is what I think.
We have looked into these options briefly! Our neurologist and medical team doesn’t want to change up the steroids quite yet this soon post the gene therapy. We plan to have our other little guy on one of these when the time comes! But our goal is definitely to not have them on the steroids! Also we plan to try weekend dosing as well. We are excited for the Econ skipping to start! Thank you for the advice! 😊
@@BafusFamily I can understand that. There is one example of two kids getting Galgt2 therapy (briefly a therapy that has nothing to do with dystrophin, but it changes a thing elsewhere and this thing uses utrophin to stabilse the muscle membrane). One kept on using steroids and did pretty well, just not as good as kids on elevidys. The other kids parents stopped steroids and he became non-ambulant soon after. I think this boy was already not doing too well and it is just one boy, so we can't connect it to taking away the steroids. But it does go against the advice of doctors. Good luck with the skipping! I hope it all works out fine. I do wonder with the older one who has had Elevidys: do you see clear improvement? A changed course of the disease? Take care!
@@BafusFamily That is excellent news. I hope this will continue! And I see it this way: so Elevidys can wear off over the years. New muscle is created and no elevidys is present so it is not sure but expected. Meanwhile they are developping better medications. SOme trials are dealing in making full length dystrophine. Just one option. That is the holy grail. But other therapies that will ammeliorate the condition are coming soon it seems. So I would think: the better preserved his/their musles are, the more can be done in the future. Let's keep our fingers crossed!
